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How to Provide Relief for Parents of Children with Disabilities by Hillary M. Ramos


*Photo created by author, Hillary M. Ramos, and Midjourney


Until this weekend, it had been a solid two years since my husband and I had more than a few hours of time alone together. While we were appreciative to have an evening to ourselves about a year ago just before our daughter was born, it was far from a restful or comfortable evening. At the time, I was very pregnant and battling undiagnosed, life-threatening, and severe polyhydramnios — I was diagnosed and hospitalized about a week later, and I remained in the hospital for about 2 weeks before giving birth to her.

Needless to say, when my husband informed me just after our last hospital stay with our daughter, Marsaili, who is medically complex, that he had arranged a whole weekend get away for us with childcare already organized, I was thrilled. Anxious, but thrilled.


He wouldn’t tell me many of the details, but I did know that he had arranged for one of my best friends to come assist us with Marsaili’s care. She is a fellow pediatric physical therapist and has visited us on many of the hospital stays for Marsaili. When asked if she would be comfortable helping us out, she was overjoyed, and I was beyond grateful for her enthusiasm.


The world of medically complex parenthood can be a lonely one. An isolating one. We live on an ever-cycling hamster wheel of trauma, doctors’ visits, therapy appointments, medication changes, and late night respiratory treatments. It can be difficult for us to get out of the house as a family, much less alone for a date night.


Numerous studies have confirmed that parents of children with disabilities and/or medical complexities experience a significantly higher level of stress than parents of “typically developing” children. Many of them find themselves frequently pouring from empty cups simply because they must. While advice to find space to fill their cups from those outside of (or even within) the caregiver community may be well-intended, it often falls flat. For many, the need to fill their cup may be viewed as “one more thing.”


One more thing to plan.


One more thing to research.


One more thing to start and not finish.


One. More. Thing.


However, the ability to fill those empty cups becomes a bit more feasible when the world of respite care can be explored.


What is respite care?


In the simplest of terms, respite care is short-term relief for primary caregivers. Primary caregivers of people with illnesses and/or disabilities work to provide care for their loved ones 24/7. The tasks they take on may include bathing, medications, dressing, mobility, nutritional needs, attending medical and therapy appointments, and numerous other daily care needs. This is a heavy weight for caregivers to carry on their own, and respite care serves as a means for caregivers to have assistance with these care tasks so that they can rest and recharge. Whether for a few hours, a weekend getaway, or even more extended periods of time, respite care can provide the means for families to fill their empty cups.


*While respite care is something that caregivers need whether they are caring for a disabled child or adult, I’m going to be speaking from the perspective of families with small children, simply because that is where we have experience. As always, this is not medical advice. None of what I say here should be received as medical advice or a replacement for counsel from licensed health professionals who know you and your loved ones well. The points I make here come from what we have learned as a family and as parents of a child who is medically complex.*


Many people are aware that there is a shortage of nurses across the country, but this shortage isn’t limited to just nurses. Shortages are being seen across all kinds of healthcare specialties, companies, and facilities, including companies organizing assistance from licensed respite care providers. In addition, hired respite care through healthcare companies can be difficult to find and may be out of reach for many families from an affordability standpoint, especially if this type of care is not covered by their insurance. This means that many families are struggling to find relief that they so desperately need and deserve.


Many families can’t help but wonder…where is my “village?” Where are the people I can rely on to help me carry this burden?


How to Be the Village


While you may not be a licensed respite care provider, you may still be able to be that village — to be that “respite care” for friends, family, and loved ones. In looking to be the village for families caring for children with disabilities, there are a few things I would recommend that you consider:


1. Know Your Limits and Capabilities: While you may have a desire to assist a family and while that desire may come from a place of tremendous love, you must consider your own limitations before offering care for a child or family member, especially for someone who is medically complex. If you’ve never taken a CPR course in your life or get squeamish around bodily fluids, it’s probably not a wise decision for you to offer to care for someone with medical complexities. Know what kind of help you can offer, what you can’t, and communicate these things with the family clearly.


You may not be able to provide care for the disabled child or person directly, but perhaps you can offer play dates for siblings, monthly meals to help reduce the mental load of meal planning and prepping, a girls’ or guys’ night out, or accompaniment to doctors’ visits (if permitted) so that the parent(s) has an extra set of hands. Relief can be offered in many ways, and it’s important to acknowledge the ways you can be most helpful without overextending yourself. Overextending and offering help that you cannot follow through on isn’t helpful to you or to the family and can increase tensions in your relationships unnecessarily.


2. Inform the Family of Your Availability: It is often challenging for caregivers of disabled children or loved ones to schedule things far in advance. Plans can shift at the last minute due to illnesses or last minute doctors’ visits. Navigating schedules can become overwhelming, so sometimes it is helpful for families to have a list of people they can rely on for care as needed, what care they can provide, and when they are available.

Within our close circle of family and friends, I have come to know the capabilities and limitations of every single one of them, and I have a general understanding of their day to day availability. I also do my best to reach out to reliable people at least a few weeks in advance if we would like to plan time out for more than a few hours. I ask them for a few options that fit their schedule, and cross reference it with ours accordingly.

Again, providing a clear set of expectations regarding the availability of your time will help the family understand who they should and should not reach out to when asking for help.


3. Accept the “No” with Grace and Understanding: There is a huge chance that when you offer a family relief or care in some fashion, they will say no. Please try your hardest not to take this personally or to be offended. Every family is on their own journey through this experience of caring for someone with disabilities and/or medical complexities. There is so much unknown on this journey, and it can be difficult for caregivers to try anything beyond what they know, which is to be the sole providers for their child or loved one. There is a sense of control that this provides them, and accepting help can feel daunting.


In addition, many families struggle to accept help for fear of being seen as a burden. They may be incredibly sensitive to “pity,” and may have to work through some of their own triggers around receiving help before they can accept it. There is also the chance that the family simply does not feel comfortable with you offering whatever care you are offering. Perhaps they want providers with specific qualifications caring for their child and do not feel comfortable leaving them with anyone who lacks those credentials.


Whatever the reasoning, please accept the “no” with grace, do not pressure the family for an explanation, and understand that just because they decline, it does not mean the offer goes unappreciated.


4. Trial Care Runs: In the event that you have a medical background or you are someone that the family trusts to care for their child with disabilities/medical complexities, offer to do trial runs with the family before a scheduled “respite” care session.


Schedule time to be in the home with the family to learn their routines and how to safely perform care tasks in a way that they feel comfortable. Communicate your own learning needs so that the family understands how they can best help you in learning the ins and outs of their child’s care. If you’re a person who thrives when they have lists, ask if the caregivers can make lists of things like daily tasks and medication dosages. If you’re a visual person, take videos of how to operate medical equipment or perform particular care tasks. You could also have the caregivers take some of these videos for you and send them to you ahead of time to review.


Respite care is only a true period of rest if both you and the caregivers feel comfortable. A trial run can provide a lot of peace of mind for both you and the family before they head off for a few hours or a few days of rest.


 

Respite care from licensed providers that is covered by the family’s insurance can be a magnificent relief for caregivers of people with disabilities and/or medical complexities. However, this care can be hard to come by, and families could use villages of people to rely on when this type of care is difficult to find. You don’t have to be everything to everyone. You don’t have to offer care to a family that you are not comfortable or qualified to give. There are ways for you to acknowledge the family’s needs and help meet them while respecting your own boundaries. We’re not asking you to shoulder the entire burden; we simply appreciate a helping hand along the way.


Originally posted at http://joyfulandrising.com on June 25, 2023

Website: http://joyfulandrising.com


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